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Challenges, Rewards Are in Store For Parents of Children With Special Needs

June 26, 2014
By IAN HICKS , The Intelligencer / Wheeling News-Register

WHEELING - There are no shortage of challenges to be met when it comes to raising a child with special needs, but Lorraine McCardle and her family have learned how to channel them in a positive way.

Lorraine's son Austin, 13, suffers from Pelizaeus-Merzbacher disease, a rare central nervous system disorder that affects coordination, motor abilities and intellectual function, forcing him to use a walker to get around. The disorder has no known cure and no standard course of treatment, leaving those afflicted by it to deal with symptoms as they develop.

Austin was born a seemingly healthy, normal baby boy. But as he began to grow, he wasn't developing skills such as crawling at the same rate most children do. For years, Austin was misdiagnosed time and time again, with everything from a fetal stroke to cerebral palsy, and even a pediatric form of Parkinson's Disease.

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It wasn't until Austin was 4 or 5 that a neurosurgeon ordered bloodwork and found the true cause of Austin's difficulties. As a young child, he had to undergo hamstring-lengthening surgery and recently, he's had to cope with a new challenge as scoliosis, or curvature of the spine, has started to set in.

Through it all, Lorraine continues to be amazed by her son's positive attitude. He loves sports - the Denver Broncos are his favorite football team, evidenced by the Peyton Manning decal on the front of his bedroom door - and hopes to be able to fly to Denver to meet the team through the Make a Wish Foundation one day

"I love Austin. He's the best guy. He's my hero," Lorraine said. "If you really think about what these kids go through, and they still have a smile on their face. ... There's nothing he thinks he can't do, and I never want him to think that."

That desire to open every possible door for her son drove Lorraine to spearhead efforts to build a Miracle Field in Wheeling - a dream that came true after years of hard work in May 2013, when the field opened at the J.B. Chambers Youth Sports Complex in Elm Grove. Now, Austin and children from all over the Ohio Valley with special needs can experience the joy of playing baseball in a safe environment created especially for them.

Raising a family with a special needs child is no easy feat. No task, such as getting to the bathroom, is routine. There are plenty of doctor's appointments, and therapy several times per week at the Easter Seals Rehabilitation Center in Wheeling.

Such stress could be a major strain on a family, but the McCardles seem to have a way of turning that into something positive. For example, Austin's older sister, Megan, is a sophomore at West Virginia University with a goal of becoming an occupational therapist, working with children like Austin.

She was 6 years old when Austin was born, and while many young children could come to resent the special attention that needed to be paid to her brother because of his condition, Lorraine said that was never a problem in their family.

"She has been wonderful - a great big sister," Lorraine said of Megan. "He couldn't have had a better one."

Lorraine continues to pray that doctors will one day develop a cure for Pelizaeus-Merzbacher. While she hopes Austin will continue to gain independence through therapy, she knows that unless a cure is found, he will need close supervision and care even into adulthood.

That sometimes leads to thoughts Lorraine would rather not have.

"I don't know what his future will entail. ... When something happens to myself and my husband, what will happen to him?" she said.

But Lorraine said she tries not to think about that very often, choosing instead to focus on the positive.

 
 

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